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Myeloma, Party Of Two: Sign Language Anyone?
By: Tabitha Tow Burns; Published: May 28, 2015 @ 3:32 pm | Comments Disabled
My husband Daniel, who was diagnosed with smoldering myeloma in 2012, has always had hearing problems. He has small Eustachian tubes that don’t adequately drain fluid, his doctors say. His struggling Eustachian tubes usually bring at least one ear infection per year, and often lead to double ear infections whenever his allergies get bad, which in the subtropical climate of Houston means a lot of the year.
Lately, Daniel has had a terrible time hearing anything. Over the years, there have been times when I wondered if he just had "selective hearing." Mainly this was due to him not hearing me during Houston Rockets or Texas A&M games. But, bless his heart, as it turns out, Daniel really is "deaf as a post" right now, regardless of what semifinal is on TV.
After seeing his ear, nose, and throat (ENT) specialist, Daniel was confirmed to have a double middle ear infection – and a good excuse for not hearing me for much of the last two weeks. As a result, the ENT specialist punctured and drained the fluid out of one infected ear. The other ear was terribly swollen, so Daniel was given antibiotics and a healthy dose of the steroid methylprednisolone.
Since then, it’s been pretty challenging. Daniel felt awful, his ears hurt, and he couldn’t hear anything. In my wifely fashion, I pestered him daily about taking his medicine, and he “selectively heard” me as needed until he finished his 21-dose supply.
Admittedly, there have been some pretty grumpy times at the Burns household, where my “cheery, chatty, let’s-get-on-with-it-nursemaid” approach was not in alignment with his “leave me alone to contemplate my soundless misery” approach. Truth be told, I would’ve been annoyed with me too, but what can you do? Life beckons, work calls, and friends attempt conversation! I’ve always been a pretty good interpreter for my usually stoic husband, but this month, it pushed even my limits.
Today, we geared up for his recurring two-month myeloma specialist appointment. We’ve been holding our breath a lot since last fall, since his rising free light chain ratio indicates that his disease is progressing toward the day when treatment will be necessary. We live our lives in two-month ‘states of readiness.’ Is this the month to mobilize for treatment, or will we get another two-month amnesty?
Well, today was definitely a good day!
We were shocked to learn that his kappa/lambda free light chain ratio had taken a significant turn for the better; it had decreased substantially! As we read Daniel’s labs together, there were improvements across the board (his hemoglobin, neutrophils, lymphocytes, urine protein, etc). It was incredible!
Briefly I fantasized about the possibilities. What could it be? We had just eaten fajitas for dinner the night before; could Tex-Mex cuisine be retarding his myeloma? Was his specialist really just about to give us carte blanche to eat all the fajitas we want – for our health? I thought to myself, I’ll fill our house with chips and queso, if this doctor will just say the word!
Before my mind could wander to guilt-free enchiladas smothered in cheese, Daniel’s specialist asked, “When did you finish the cycle of methylprednisolone?” “A couple of days ago,” Daniel said.
And there it was. Sure enough, we could thank our friend “Methyl” for Daniel’s stellar report. No stacks of chips and salsa for us, no chipotle-smoked fajitas laced with undeniable excuses of “It’s for his health” attached to every savory bite. It seemed that we can thank methylprednisolone for another two-month reprieve, and not our favorite Tex-Mex fare.
Don’t get me wrong, we’ll take it every day of the week. In fact, Daniel and I had the same thought as we left the hospital: “Given treatment for ear infections or myeloma, I’ll just keep taking the methylprednisolone, thank you.”
Daniel’s myeloma specialist was laughing with us, saying that Daniel needed all his five senses, and therefore we shouldn’t trade his sense of hearing just yet. But to be honest, I bet Daniel would gladly trade his hearing for complete, total, and everlasting remission of this disease.
The truth is we do know that Daniel is smoldering, and we do know about what the world of myeloma can bring. And given myeloma or ear maladies, I would learn sign language and put up with a lifetime of “selective hearing” to keep him from progressing. I’ll give up help with the laundry, honey-do lists, and all my banal chatter if I could just get my husband back to normal.
How bizarre to be at a place in life where you’d trade your hearing for a cure to myeloma! Obviously, hearing is a sense that none of us want to live without, but I agree with my husband that it seems like a small price to pay for the gift of life, especially when you’re 41 years old and potentially facing symptomatic myeloma.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here [1].
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